The patient's journey

The journey to a diagnosis from the patients' perspective

Information to you who are a parent of a child with a rare medical condition who is interested in taking part in this interview study.

What does participation involve?
The interview aims to uncover the journey from the first symptom to the final diagnosis.

The research related to four qestions:

The first symptoms you identified

Your first contact with health services

The journey to the right diagnosis

The family’s experience

A short summary

Objective: To identify the diagnostic journey of children with rare diseases.
How: Interviews with parents of children who have good insight into the child's medical history and the diagnostic process. The interview consists mainly of open questions to capture as much of the patient's and family's perspectives as possible.

Aim: By identifying common critical steps in the diagnostic process of several children with rare diseases, we hope to be able to improve and simplify the process.

Background: Patients with rare diagnoses have a relatively longer journey to get a diagnosis and the right treatment. The process can take years and involve visits to many doctors. In order to optimize care a project has been started to investigate the process from the patient’s perspective.